I have a friend who is a pastor in a hospital. As you can imagine, he sees a lot of what we as SMARD parents deal with–anger, sadness, depression, anxiety, etc. He told me that people usually deal with major issues in one of four ways: they eat it, they drink it, they shop it or they f*#* it. His comment really got me to thinking about how I am dealing with Dakin’s illness.

When Dakin was in the hospital, I gained 15 pounds. Waiting for test results I gained another 35. So, clearly, I eat my stress. It was not a healthy response and my body is still suffering from my lack of ability to deal with the stress in a healthy way.

I am attempting now to find alternatives to help me deal–because obviously the issue isn’t going away. One of my favorite releases is reality television (don’t judge me…ha!), especially the Real Housewives series. I am sure you know how it is–the sadness and reality of SMARD is just too much sometimes, but I know concentrating on the ridiculous lives of these ridiculous women will help distract me–at least for a little while.

What are your favorite releases? How have you coped–negatively or positively–with the stress of SMARD?

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4 responses to “Dealing”

i found that whilest maddison was in hopital,waiting for a diagnosis and the build up,i didnt eat almost anything (not good).After 9 weeks of not eating i got to the point of were i collapsed and was sent home for the night,this was bit of a wake up call because i was sent away from my baby for just 1 night,but that 1 night of being away from her broke my heart.
For the following 8 months of maddison stay in hospital i treid my best to eat more and look after my self,so i could be strong for my maddison.
like devon i liked to wacth a bit of realty t.v and talking to other parents really helped.
i dont there is a way of getting over this SMARD thing, all we can do is cope.

Wow, you are an inspired woman Devon! I have been thinking about this for the last few days A LOT!!! Since Presley was born and we kept thinking there was something wrong I have gone through many many phases of dealing. My first was “Oh my poor baby will never walk, and if she does she will have to have boots and a walker!” Oh geez, how I wish that was my worry now. That made me wanna binge! A shake or ice cream would calm me for a short while……When things started looking more serious and they said lungs were in danger of collapsing from scoliois….I shopped. Like not a little shopping…. A LOT! I worked as a hair stylist in my own salon at home very part time and with that me and Presley would shop shop shop! She loved it! She still loves it! She loves trying on clothes and getting new outfits! “awe cute!” she says. I shopped so much I didn’t even realize. When Presley was hospitalized I had to quit working ( I was only very part time but still made enough to help) I thought we would go broke. I realized my shopping problem when I quit working cause of the 4 month hospital stay, and we actually spent less, and saved more. Wow. Who woulda thought. Now I am at home ALL the time, as are most of us smard moms/parents-especially winter-and I dont know how to deal. I can’t shop. Eating makes me sick cause I am not as hungry when im pregnant, and honestly i am in a place where i dont know how to deal when i need it. I try to go to lunch with friends and still shop a little on my tuesday with a nurse at home, but ya im kind of a lost soul. Hopefully this is a “pregnancy thing/winter thing” and I just cant wait to get back to summer when i can get out with my sweet girl and show her more of the world! For a while i went to the gym every morning and ate super healthy and that helped me deal too-i had something i could try to control. But being pregnant makes me not wanna workout for some reason and frankly im just too tired! So basically my reply wont help anyone! haha! I am hoping someone has better suggestions than me!!! heehee! My husband looks at pictures of presley when she was walking and says it breaks his heart and makes him too sad. I feel a little different. I am so grateful for the time we did get and i am grateful for the time we do still have now, its priceless and though its hard to deal with reality sometimes and i wanna live in denial, I cant help but always coming back to a place of gratitude and faith in a greater plan because of the type of person Presley has helped me become and makes me want to continue to become. I like your reality tv therapy! I watch a few shows myself and sometimes i like my mind to wander to, “geez so glad thats not me..” I would love to hear what others do! I need a healthy way to deal. Especially for winter!

Oh Devon, you are so good! Your comments hit home for me. The only way for me to deal with having such a challenging and complicated life is to allow my brain to sporatically go on mindless vacations through the realm of reality TV.

I started watching The Real Housewives of Orange County when the doctors discovered that my little Valentia had a growth restriction in utero, this was the only thing that calmed the chatter in my head. Not even yoga would do the trick, even after it had for so many years before! Fast forward and now I truly need my hit of The Real Houswives of Beverly Hills, because “that’s where I want to be” at least for that moment in time. Loathing Camille Grammar is the only time I truly feel my mind having a lucid interval of true rest, where I’m not thinking about whether Silas isn’t kicking as much as he was yesterday, or if somebody who was around him sounded like they had a rasp in their voice, is the travel suction machine working properly, what is the nursing schedule going to be like when our main nurse starts her internship, will I be able to make his first birthday or Christmas as grand as it should be, if I should be doing more to find a researcher to study smard, as you know, I could keep going…

I also discovered another show called Wives of Rock that truly allows my mind to escape to the longest interval of lucid restfulness (is that even a word?).

I read an article some time ago saying that gossip and mindless television is actually good for exactly these things mentioned above, to escape your own reality and give your brain a rest. It is also a way to connect with those around you…

PS~ I forgot to mention another coping mechanism I’ve been using since Silas came home (after the diagnosis) to help me deal with things. I’ve read at least 20 completely vapid books in the past 6 months, including Lauren Conrad’s “Hard Candy” Trilogy (yikes!), 2 of Tori Spelling’s 3 autobiographies (excluding “Mommywood” for the obvious reasons), Nicole Ritchie’s books (I’m finishing “Priceless” now) and too many others to list.

There’s nothing like a good book to escape, right? Well, these masterpieces can hardly be called good, but they’re great examples of mindless self-indulgence that help clear the chatter in my mind, especially if can’t sleep.

Sometimes I forget to stash these books away when someone is coming to our house. I mistakenly leave them dangling out in the open for all to see, including the older nurses who on occasion have commented, “Are you really reading THAT?” and I’m left struggling to explain why the blue blood upbringing of Hugh Jackman deserves my attention. One day I strolled into the room where Silas watches TV and found one of the nurses reading, “The Power of Kabbalah, technology for the soul”, one of the books I purchased online during a book shopping binge (referenced in Madonna’s brother’s autobiography). Need I say more?

Welcome to Bridging the Gap

Hello! If you are here, it probably means you know and love someone with SMARD (Spinal Muscular Atrophy with Respiratory Distress). SMARD, a genetic neuromuscular disorder, is extremely rare, and there is neither treatment nor cure.

Here at Bridging the Gap, we are hoping to offer a lifeline to families struggling with a SMARD diagnosis. Knowing that SMARD patients are few and far between, we would like to bridge the gap between us, as well as offer support and a community.

Welcome! If you have any questions or are recently diagnosed and don't know where to begin, email us at bridgingthegapSMARD@hotmail.com

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Resources

http://fsma.org Families of SMA is an organization dedicated to helping families affected by SMA and SMARD. They are involved in research and fundraising as well.

http://fightsma.org FightSMA is an organization that lobbies for SMA research in the US.

http://SMASpace.com SMASpace provides a place that parents of children with SMA and SMARD can communicate. There is a specific group for SMARD.

http://fightermom.com Mothers as disease advocates.

http://gwendolynstrongfoundation.com The GSF advocates and raises money for SMA research and cure. They are especially involved with stem cell research.

http://kidzorg.blogspot.com Kidz is a great place for special needs parents.

http://www.5minutesforspecialneeds.com A site for special needs parents.

http://littlestheroesproject.com Littlest Heroes offers free photo sessions for chronically and terminally ill children and their families.